With Aotearoa New Zealand’s ageing population, demand for palliative care is projected to increase substantially in the next 20 years, whilst equitable access to palliative care services is emphasised in the Ministry of Health’s Palliative Care Action Plan.[[1,2]] Like other well-resourced countries, community palliative care in New Zealand is delivered via a primary-specialist model.[[3]] The Ministry of Health has based their definitions of specialist and primary palliative care on providers’ degree of training or experience and those who work exclusively in palliative care. Primary palliative care is provided by any health professional who is not part of a specialist palliative care team as an integral part of their standard practice, e.g., a general practice team.[[4]] Community specialist palliative care (SPC) services deliver or support home-based care for those who have life limiting condition and in New Zealand, is currently delivered by 33 hospices. Hospices in New Zealand are independent, charitable organisations that provide support to people with life-limiting conditions and their whānau at no cost to patients.[[5]] These hospices provide care both directly to patients with complex needs and indirectly by supporting primary palliative care teams to care for their patients with palliative care needs.[[2]]

Health disparities in New Zealand are well documented, and Māori experience both higher cancer incidence and higher mortality rates than non-Māori regardless of education level or occupation.[[6,7]] Moreover, palliative care services have not historically been developed to specifically meet the needs of Māori. Māori have not accessed palliative services at similar levels as non-Māori, possibly due to low levels of awareness or misconceptions of palliative care services.[[8,9]] Recent calls for more equitable healthcare delivery have included consideration of palliative care.[[10]] To develop a sustainable and equitable model for the future requires starting with a stocktake of the status quo, including areas of gaps and inequity.

Criteria for defining models of specialist palliative care remains a developing area of research; furthermore, the term “model of care” is used inconsistently in studies and policy documents.[[11]] Up until recent work by Firth et al., there has been no consensus on core components of a specialist care service model both internationally or in New Zealand, which poses challenges for making comparisons between models of care and development of evidence based health policy.[[12]] Research examining models of specialist community palliative care in New Zealand is very limited.[[11]] Service models differ across the country, and studies in New Zealand have generally been limited to individual services and certain aspects of the palliative care services.[[13,14]] Unlike other well-resourced countries, benchmarking or stocktake of SPC services has not yet been conducted in New Zealand.[[15]] Moreover, provision of quality SPC services in rural communities remains a challenge and under-resourcing of SPC services in remote areas in New Zealand is well recognised.[[16]]

The objective of this study is to describe the current landscape of specialist community palliative care services across New Zealand whilst incorporating an equity lens on these services.

Methods

Study design

This study used a descriptive cross-sectional survey to describe and summarise aspects of hospice services. The survey design was based on the Firth et al.’s conceptual framework that sets out core components of specialist palliative care service, with the addition of questions on equity and service provision for Māori populations.[[12]] An online survey was created using Qualtrics software (Version [July 2021] of Qualtrics, Qualtrics, Provo, UT. USA). Paper-based surveys were also available on request. There were 31 service-related questions with five additional demographic questions about the respondent who completed the survey. Examples of aspects of services of interest were related to care settings, staffing, number of referrals, demographics of serviced population, types of care provided, out-of-hours (See Appendix 1 for the full set of survey questions). The survey was peer reviewed by three senior clinicians before dissemination.

Study population and recruitment

A total of 33 hospices were identified via Hospice New Zealand website. One hospice does not provide direct clinical care and hence was excluded from the study. Clinical or service leads of each of the 32 remaining hospices were emailed individualised links to the online survey, participant information sheet and consent form. Hospice New Zealand assisted with recruitment by emailing out an introductory letter about the research project to all hospices in April 2021, which was followed by survey links two weeks later. Participants were asked to give consent electronically prior to undertaking the survey. The study was approved by the University of Otago Ethics Committee (D20/024).

Data analysis

Responses were recorded in Qualtrics and downloaded to an Excel spreadsheet and statistical analysis was conducted using statistical computing software R 4.1 (R Institute, Vienna, Austria). Questionnaire responses were reported using descriptive analysis, e.g., frequencies, means and standard deviation to determine the general patterns in the data. As the respondent frame covered the entire set of Hospices operating in New Zealand at the study date, no inferential statistics were calculated or reported.

Results

Clinical and psychosocial services

All 32 invited hospices completed the online survey. Most hospices provided direct hands-on care (n=31) and all hospices provided face to face care whilst just over half (n=16; 53%) also offered telehealth. All hospices provided care at home, with 94% (n=30) also providing care for patients in aged residential care facilities. All 32 hospices provided symptom management, family and carer support and bereavement care. Most hospices also provided psychological care (n=30; 94%) and spiritual care (n=30; 94%) with a smaller number providing respite care (n=17; 53%) and rehabilitation (n=8; 25%).

Fewer than half of all hospices (n=13) had inpatient units, with the majority of these having between six to ten beds (n=11). The most frequent number of referrals accepted were in the range of 200 to 499 per year, with only a minority of hospices (n=6; 19%) receiving more than 1,000 referrals per year. Almost all hospices reported having standardised acceptance criteria (n=31; 97%).

The most frequently employed professions were nursing (n=29; 91% of hospices), followed by medical professionals and social workers (both n=25; 78%), spiritual workers (n=21; 66%), complementary practitioners and counsellors (n=20; 63%) (see Figure 1). Within medical personnel, the most commonly employed roles were palliative medicine specialists (n=21; 66%), followed by medical officers (n=19; 59%) and general practitioners (n=11; 34%). Only nine hospices (28%) had positions for palliative medicine advance trainees.

Hospices offer a range of procedures with syringe drivers (91%) being the most common (see Figure 2).

Most hospices provide spiritual care (n=29; 91%) and care is delivered by a staff spiritual carer (n=20; 63%), visiting spiritual carer (n=11; 34%) and by “others” (n=9; 28%).

About two-thirds of all hospices (n=22; 69%) had implemented patient reported outcome measures in their clinical services, with most (n=19) having adopted the Outcome Assessment and Complexity Collaborative’s (OACC)  suite of measures (either Palliative care Outcome Scales [POS]; or Integrated Palliative care Outcome Scales [IPOS]).[[17]] Another suite of measures used were Palliative Care Outcomes Collaboration (PCOC) (n=4) and four hospices reported use of other measures.[[18]]

Figure 1: Professions employed by New Zealand Hospices (n=32 total).

Figure 2: Procedures provided by New Zealand Hospices (n=32).

Provision of afterhours nursing and medical service was reported for 22 and 20 hospices respectively, with four of these hospices offering “telephone advice only”. Six hospices reported that no routine afterhours care, either directly or via telephone, was available for their patients. Only a minority of hospices provide afterhours psychological (n=3; 9%) and spiritual care (n=6; 19%).

The mean percentage of cancer and non-cancer patients across all hospices were 64% and 36%, respectively. Ten hospices only provided care to adults, and there was no paediatric-only hospice.

Education and integration with other health providers

Most hospices offered specific education sessions to outside professionals (n=28; 88%) with most of these same hospices also delivering onsite professional (n=26) and student training (n=25). Of note, only nine hospices (28%) were found to be specialist palliative medicine training sites. Most hospices offered liaison staff in other settings: hospital (n=14; 44%), primary care (n=10; 31%), aged residential care (n=20; 63%) and other settings (n=6; 19%). Seven hospices (22%) had no liaison staff in other settings.

Bereavement care

All hospices provided non-complex bereavement care for adults, and a majority (n=21; 66%) extended that care to bereaved children. Many hospices also provided complex bereavement care for adults (n=22; 69%) and just under half (n=14; 44%) offered complex paediatric bereavement care. Modes of routine contact following death were telephone (n=29; 91%), letter (n=20; 63%), face-to-face (n=24; 75%) and in a group (n=20; 75%).

Equity in care

About three-quarters of hospices reported keeping ethnicity data for their patients (n=23; 72%) and these hospices were asked to give the estimated percentage of patients seen by their service. The median percentages of NZ European, Māori and Pasifika peoples were 70%, 17% and 1%, respectively. Percentage of Māori seen ranged between 3 to 49% across the 23 hospices.

Māori population

Māori cultural competency staff training was reported by most hospices, covering topics of Te Tiriti o Waitangi (n=25; 78%), Māori customs (n=18; 56%), Te Wairuatanga (n=14; 44%) and other topics (n=10, 31%). Three hospices reported no staff training in Māori cultural competency (9%). All hospices reported having knowledge of local Iwi and/or Māori providers, with 10 hospices (31%) having partnership agreements and 19 (59%) engaged regularly with Māori providers. Types of regular engagement reported were hui (n=10; 31%), written correspondence (n=9; 28%), social media (n=1; 3%) and others (n=9; 28%). Fifteen (47%) hospices do not have a cultural, or liaison position designated for Māori and median full time equivalent (FTE) across all hospices for such position was 0.2 FTE (i.e., one day per week equivalent).

Other cultural groups

Four hospices (12.5%) reported of having cultural liaison staff specific for other cultural groups with two of these hospices having support staff for more than one ethnic groups. Ethnic groups catered for by support staff were Pasifika (n=2; 6%), East Asian (n=3; 9%) and South Asian (n=1; 3%). About two-thirds (n=22; 69%) hospices reported having a budget for interpreter services. Common types of interpreting services used were reported to be via family, telephone and in person professionals (see Figure 3). Only seven (22%) hospices reported having a specific policy for patients with a disability.

Figure 3: Types of interpreting services used in hospices.

Rural communities

Most hospices (n=28; 88%) reported providing care in rural areas, defined in the survey as more than 30 minutes travel time from the nearest base hospital.[[19]] Figure 4 displays the types of care offered.

Figure 4: Types of care provided in rural areas by hospices.

Discussion

This study surveyed all hospices in New Zealand regarding the populations they serve and services they provided and is the quantitative part of a mixed method study for determining a future model for community specialist palliative care in New Zealand. This study found areas of similarity and variability in services provided by hospices. Areas of similarity include a holistic approach to care, a cornerstone of palliative care; and hands-on care including end-of-life care delivered at home by multi-disciplinary teams.[[20]] Such a finding is noteworthy as home base palliative care programmes have been shown to improve quality of life, increase home deaths, reduce hospital service utilisation and to be cost-effective.[[21–23]] Another commonality was that hospices commonly engage in education for people in primary palliative care roles. Education and training are known to facilitate collaboration between primary and specialist palliative care; however, previous studies found effective education models may vary between professionals.[[24]] A previous study in New Zealand evaluating a palliative education programme in the form of workshops, that aligns with clinical practice, resulted in sustained improvement in knowledge, skills and confidence in general practitioners.[[25]] Similar research should extend to other professional groups to identify elements of effective education model. The last Ministry of Health Workforce Stocktake, published in 2009, identified palliative care medical specialists as one of the biggest workforce issues for both hospices and hospitals. One could argue whether the small number of advanced training hospices found in the present study is adequate to remedy the workforce shortage issue and meet future demand.[[4]]

As a contrast, the study identified many areas of variability between hospices, some of which may lead to inconsistent care across settings and population groups, a concern previously voiced by the New Zealand palliative care sector.[[1]] A key element of providing end of life care at home is to have round-the-clock access to palliative care including SPC; the fact that 19% of hospices were unable to provide any afterhours care (direct or via telephone) is potentially concerning, although it is unclear from this survey whether alternative arrangements with other out-of-region SPC providers exist to fill that gap. This finding suggests hospices are more limited to provide afterhours care to their patients than previously reported.[[4]] Conversely, comparing with the Ministry of Health’s report in 2009, the number of hospices with an inpatient unit has increased by one, although it is not known whether this led to changes in the total number of hospice beds in New Zealand.[[4]]

The New Zealand Palliative Care Strategy highlighted Māori as a group requiring specific policies, community linkages and care coordinators to ensure “culturally appropriate” and “coordinated” service implementation.[[26]] Although the majority of hospices were found to offer Māori cultural competence training, the varying availability of Māori liaisons or their equivalent suggests inconsistent access to appropriate cultural support. Similarly, this study also found varying levels of support for other cultural groups including Pasifika peoples. Health equity is a priority in New Zealand and the relatively small number of hospices engaging actively with local Māori providers indicates that further work in this area is needed. Future efforts can be guided by Hospice New Zealand’s recently published Mauri Mate that sets out a Māori Palliative Care Framework for hospices, including one recommendation for the need for hospices to develop good engagement and relationships with local Māori communities. These relationships could help to dispel myths about hospices (as only a place for people to die) and reveal insights into traditional Māori values, customs and local resources.[[27]]

This survey also highlights a potential gap for hospices in meeting the palliative care needs of people with disabilities as only a minority of hospices have policy specific for this frequently overlooked group. The rising number of people with disability living into old age will see increasing age related illnesses requiring palliative care, ideally delivered by a workforce that are equipped and confident to meet their unique needs.[[28]]

Historically, hospices in New Zealand and overseas have had a strong focus in caring for cancer patients.[[8]] Although there is an increasing recognition of the value of palliative care for people with non-malignant diagnoses,[[1]] this study found the profile of patients continues to weigh heavily towards cancer. One explanation could be that the unpredictable trajectory of non-malignant diseases makes appropriate timing of referral to palliative care difficult.[[29]] As the burden of non-malignant disease increases with the ageing population, changes in the model of care may be required. For instance, this might include SPC services providing episodic instead of the usual round-the-clock care for chronic conditions to support primary care teams via shared patient electronic records and, in the event of patients’ sudden deterioration, enhanced responsiveness to enable home deaths.

Community SPC access for children continues to be challenging due to the small number of paediatric patients seen in general. The current model of Starship Hospital, Auckland being the national resource service to collaborate with patient’s primary paediatric team and local adult specialist palliative care services is likely to continue in the foreseeable future.[[4]]

There were several strengths to this study. To the authors’ knowledge, this is the first comprehensive study to describe community SPC services in New Zealand. All eligible hospices responded which provides an excellent snapshot of populations served and current service provision. The survey utilised an existing robust framework specifically designed for describing specialist palliative care services.[[12]] The survey covered a range of areas of relevance for future planning in Aotearoa New Zealand, including a focus on Māori population and equity.

There were several limitations to this study. Qualitative responses were limited to free-text boxes with a lack of details to clarify responses especially when respondents chose the “others” option. Although most hospices reported providing services to rural communities, due to the service provider framework utilised in this study, comparison between rural and urban services was not feasible and a future study from a service population perspective that specifically examines inequity in access to SPC in rural areas is warranted. There is considerable overlap in the catchment areas covered by hospices which precludes subgroup analysis according to geographical areas and population size. Financial data collection was outside the scope of this study and the extent to which variations found between hospice services attributable to funding levels was not examined.

Conclusion

The present study demonstrated hospices in New Zealand provide holistic care at home by multi-disciplinary teams. Areas of inconsistency were highlighted, particularly in afterhours access to SPC and cultural support for Māori and other ethnic groups. The number of advanced training hospices remains small and the capacity of the current system to address shortages in the previously identified palliative medicine specialists is questioned. Future studies comparing SPC services between rural and urban communities in New Zealand is warranted to identify other areas of inequity.

View Appendix.